I was diagnosed with PBC back in Dec 2015 due to elevated LFT's, raised GGT and AMA of 10.5. I started on URSO immediately and since I have also been taking a herbal tincture. For the last 6 months (2 tests) my bloods have been normal and last time my .AMA was 9. My GGT is still slightly above normal but reducing all the time and almost within the normal range.
My question is...is this the URSO (or herbal stuff) working...or is there a chance I don't have PBC. Also, can PBC be reversed if caught early enough as it seems I was luckily caught very early. I'm also wondering whether it's the URSO causing the itching I'm getting. I didn't suffer with it before I started on the mediction. I'm also wondering whether I need to take the urso anymore. I'm tempted to try 6 months without it and see what the next 6 month blood test shows?
Has anyone else had a similar experience?
I'm obviously delighted, but I can't say I feel any better in myself as I still have the odd spell of itching at night which leaves me very tired and I still feel more tired than I used to pre diagnosis.
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Hils67
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Well as I understand it, once you are diagnosed with PBC it's with you for life (unless a cure is found).
It might be in your case yours has halted as I believe it can do. Sounds like your was in the very early stages and your LFTs might continue to remain normal.
I originally started to itch early 2010 and that is how I was diagnosed with the PBC December 2010 and started the urso. I do however think that it can make the itch worse if you itch in the beginning and can also cause itching. If you read through the patient info leaflet that you might have got with the urso (if you got a generic - pharmacy labelled bottles - then they can print you the info out as they'll have got one of the leaflets with their large supply they bottled). I know I take Destolit and my leaflet states that one of the side-effects can be pruritis which is itching. My itch has altered since 2010, it's not as intense as it was and usually confined to night time so for me the urso has achieved that even if it's not brought my LFTs back to a normal range. (I do think that in early 2010 had I have been offered the urso my LFTs wouldn't have continued to climb for the 9mths they did before I was prescribed the urso but that is the NHS...)
Fatigue in PBC can continue, I was fortunate that in my case mine seemed to vanish in 2011. The urso can't resolve that issue like the itch if you have it is seems.
I think it can be hit and miss as to whether the urso can help as in the 2mths prior to me going to the hospital on my first visit back early November my LFTs actually dropped somewhat of their own accord so that is what gave me hope after diagnosis. they might not have returned to a normal range then but they did come down without any meds.
I doubt a doctor would advise you to come off the urso but it is your choice. Mine said in 2011 that if I thought the urso was making the itch worse as it did in the beginning then to come off and see if it was that. I never did of course.
In the early days I didn't do too well taking in the fact I was supposed to be taking the urso for life and on the rare down day where I didn't eat very much I noticed that without taking urso (as to me urso spells taking food due to it being a bile component) I hardly itched that night and also the following night I seemed itch free but then back to normal the day after due to having to eat of course.
Though I can't say what to do, I think if I was in your shoes and out of curiosity I might be tempted to stop taking the urso a wee while prior to the bloods being retaken and see what happens. I somehow think that 6mths could well be pushing it. I know the urso took several mths in my case before I didn't get a bit of tummy bloating and heartburn (never had pre-urso) and the itch to seem like it was going back to how it was in the start.
Be interested to know what you do. I sincerely hope that you continue to have the normal LFTs you have. It's reading these positive postings on here that I find gives us some hope.
Yes, I'm curious to see what would happen without the urso...I may do as you suggest and cut it out for just a short while before my next blood test...maybe 6 months is too long a spell...I don't want to do any damage as I might make things worse!
Little bit daunted by stopping medication...so I'll see how it goes, and I'll let you know xx
What is the herbal tincture you are taking? Very interested. I strongly believe in herbal suplente and I would not be surprised if it is the combo of the herbal stuff and Urso that has dropped your numbers.
Hi, the herbal tincture was made up for me by a herbalist friend and it is a mixture of various herbs including milk thistle and some other things to help me sleep. If you search on here for herbal tincture you'll find my earlier post which gives the breakdown..although as I said this was made up specially for me. I think some over the counter herbs can be quite weak and not very effective, raw herbs are best!!
Hi Hils, that's wonderful that your labs have improved, but that is not uncommon after going on urso, and it is almost certainly because the urso is working as it's supposed to. I seriously doubt there is a liver specialist on the planet that would advise you to go off the urso. Unfortunately, there is no cure yet for PBC, and it is important to keep it from progressing. It's great that you caught the PBC early, but I wouldn't risk undoing that advantage by stopping the urso now. Speak to your doctor about the itching, there are various things you can try to see if they help. Eat a healthy diet, keep moving, stay on the urso, and odds are you'll do very well. My two cents. 😉
Hi Diane, yes, I know what you mean. On reflection I think my tiredness is more.related to the stress I've been under at work. I've always been a coper and very conscientious in my work and because of excessive workloads I've been over working...but I'm seeing occupational health soon as it can't go on like this. I know I need to change the way I react to workloads but also my work need to take action to. I'm using my condition as a lever but I really think I'd be in the same situation even if I didn't have pbc!
You're probably right about not stopping the urso...I just wonder whether as my lfts are better whether the excess bile from the urso is what's causing the itching I get sometimes...although the itching does only seem to occur when I get over tired usually when I've not been able to sleep dup to worrying about work...it's a vico us circle. I'm hoping to get some cognitive behaviour therapy through occ health which may help. I just want to get back to feeling happy go lucky again. I've accepted the condition and know how lucky I am with lack of symptoms and being caught early...I just need to nail this stress thing!!
Just an after thought, maybe perhaps dropping the daily dosage of the urso might alleviate the itch to see if makes any difference. It's supposed to be a rough guide that the urso is given due to our body weight and that varies between PBC individuals the actual dosage. I was prescribed 10mgs per kg body weight but I have in the last 6yrs lost a bit, not much but I know my mgs per kg body weight are more than likely going to be around 13mgs as originally the GP rounded it off to several more kgs than I was at the time to calculate the urso.
That is very surprising, perhaps there is one on the planet after all! The vast majority of hepatologists tell PBC patients to expect to be on it for life, particularly when labs have responded well to taking it. Some will start patients on it at the first sign of AMA/M2 antibodies as a preventive measure even before any symptoms or abnormal LFTs show up, as the presence of AMA sometimes appears years in advance of symptoms and can be predictive of the development of PBC. If you happen to be significantly overweight perhaps your hepatologist considered the weight to be as much of a risk factor in your situation as the PBC. There are numerous threads on here that discuss urso and possible weight gain, and as I recall, most people do not experience this to any significant degree. My hep says he has not found it to cause weight gain in a majority of patients, but there seems to be some controversy. For the record, I do NOT take urso myself, but it was discussed at length. I am in the group of those that test positive for AMA/M2 but have normal LFTs, a completely normal liver biopsy, and no clinical symptoms of the disease. We are just monitoring at regular intervals for now. Best of luck to you.
I just stopped taking Urso. It was making me constantly hungry to where my stomach would cramp and hurt until I ate. I had lost 16 pounds but Urso made me gain back half, raising my A1C besides. I'll be laid up from knee surgery and don't want to gain anymore. Also, steroids make me eat more. I was diagnosed early with elevated AMA, AST, ALT, TBIL and DBIL but not ALP. I began cutting out preservatives and other toxins from diet and eating lots of oats with meals. My liver tests are normal and the itching is gone. I started Enbrel in Dec for AS and I'm hoping that it staves off PBC. I hope that you stay symptom free.
You mention that you still feel more tired than before pre dx. I am too in your same boat, dx in April 2016 and my liver enzymes returned to normal quickly. I never had symptoms, and was in my post partum phase where I'd had 3 blood transfusions but evidently I am still with PBC regardless of my enzymes being normal, after starting urso. I now have a 14 month old and I am happily not tired anymore I still take my urso but I plan to ask at my next consult, in September what the deal with all this is. I get blood work done more frequently but because I am literally asymptomatic I just keep on taking my urso and my herbs (milk thistle for me) and living life to the fullest, grateful that I feel well now, and pray that continues so I can see my little girl grow up.
So glad you're feeling well and hope you continue to do so. I'm not due to see my consultant until much probably April next year as I'm on annual appointment with him, so I'm trying to figure out things for myself. I suppose there's a part of me which thinks I've no longer got pbc,,,but as others have said once you've got it you've got it...so I guess I'd better carry on taking the urso.
I think my tiredness is more work stress related so I've got to try and rectify that situation and get back to feeling normal again.
I was diagnosed in 2013, I had pain in my right side and my liver counts were all high and positive ama, i also had a biopsy done. I dropped all my blood pressure meds thinking it was that causing my pbc and started ursodiol at the same time, my lft all came back down to normal after starting urso and dropping my meds, however pain has never gone away, I have fibrosis started in the liver, my understanding is the alkaline phosphate (the bad stuff in your liver ) that isn't flowing thru your liver damages the liver by using out of the liver onto it causing the high lft. I used to wonder if it was the blood pressure meds also, I restarted the meds but have changed them trying to get ones not metabolized in the liver. I wished I would have started the ursodiol sooner so my liver didn't get damaged as severely as it is( I'm at stage 4 now ) I wouldn't stop taking the urso, especially if it's working, don't take the chance of doing more damage than necessary because you can't undo that damage.
Pain is in right lower abdomen below my ribs, I can't sleep on my right side, some days are worse than others. Same with being in the front side or back side.
LFT are all in normal range now, but I believe the pain has actually worsened over time, I have read other posts that even with normal LFT they have gotten cirrhosis. Sorry about the late response, I didn't see your question until now. Do you have pain in your side ?
I have a dull ache 90% of the time, under my right rib cage, upper right quadrant, almost like a sensation that my liver is there, but not actual real pain that would require a pain reliever. About a month ago, I felt pain in my back, kidney area, but a little lower.
My LFTs are not high, Alk Phos is now 119, but has gone to 128. ALT and AST have been doubled in the past, but now ALT 58 and AST 45. My GGT was 225 several months back, and AMA tested positive 7 months ago at a 1:40 titer. No itching, but have varying levels of fatigue. Been diagnosed with Raynauds for decades that's been bad at times and RH arthritis since 2014, although it's minor.
I've not had a biopsy yet and I'm not on Urso. I'm going to a large university medical center to Hepatology on Thursday to find out what is going on and to get care.
That pain sounds exactly like mine, get on urso asap, it brought my numbers back to normal very quick, within one month a big drop, and normal within a few, I wouldn't do the biopsy again knowing what I know about PBC now, I have an ultrasound done yearly and there is a blood test for a tumor marker I do yearly. For years my my liver counts were high and my regular doctor did mri s and ultrasounds but couldn't find anything wrong, after the pain started he referred me to a GI doctor and he figured it out quickly, I wished I had started urso before the pain but I wasn't diagnosed. I haven't had any bad side effects from urso. Good luck on Thursday, if you have any other questions let me know, it's very scary at first, and the pain bothers me, it's a constant reminder there's something not good inside of you, my doctor said liver can't have pain, but there's inflammation causing it. My Esophagus was also effected, a little swollen, I had a hard time swallowing at times, I started a drug to slow down the stomach acid pumps and that helped. Again good luck on Thursday and if there's anything I can answer for you let me know.
I think they are going to demand I get a biopsy , that seems to be the way it is in the USA. The GI doc wanted me to get one last July when he saw the AMA, but originally thought it was fatty liver, which showed two times on ultrasound. I'm guessing I have both. With my numbers being so low, I don't quite get why I have the liver sensation. Have you ever had an MRE or a Fibroscan?
Before I was diagnosed correctly they said I had a fatty liver also, never had a fibro scan or mre, I actually was going to check into a fibro scan this week, theres not many places that do them around me I am from the US also and my insurance has gotten so crazy high priced I have such a high deductible it does not cover anything for the first $6000 So I need to look into the cost. I would ask other people about the biopsy, looking back at it I wouldn't do it again, they snip a part of your liver out and I feel like if it's already inflamed and sore it didn't help the liver any and my pain has never gone away, but I also try live my life normally and eat and drink what I want, but I can tell it does effect me. A positive AMA and high alkaline phosphate count are almost an exact diagnoses I think, the other thing with the biopsy is its only taking a very small part out from one area of the liver and it doesn't give you the exact picture of the whole thing, I believe it's the only way they can tell you what stage you are in though, I'm at 4 with fibrosis. However there's no set timeline how fast it advances, everyone is different. Find a doctor that know PBC, I went to the mayo clinc in mn after diagnosed and got a lot of answers, now I'm with my liver doctor at my local clinc, I'm from Minnesota, where are you located ?
There's no cure for PBC: elevated antimitochondrial antibody and biliary tube inflammation so far, let me know if I'm wrong. I thought I conquered it too w Urso, diet, exercise, no alcohol, weight loss, acupuncture, yoga, reike, milk thistle, tumeric, zero symptoms, falling in love and normal enzymes. No such luck...
Please let us know please what was in your herbal tincture. I can't find your previous post with the ingredients. Welcome to our group.
Rose, skullcap, milk thistle, nettle, Schisandra, chamomile, dandelion, lavender. I'm not sure of the proportions, and like I said before some of these are to calm the mind as I tend to overify think things...I remeber the skullcap is for that and I guess the chamomile and lavender too. I also take passion flower for the itch which does work sometimes.
It's worth seeing a herbalist as they look at your medical history and symptoms. I know my friend is a very good and well qualified herbalist and she did a lot of research into pbc before making up the recipe...but I really think it helps.
Good news that your liver results have returned to normal range but I would say this is due to taking the Urso, PBC will not disappear. I strongly suggest that if you do stop taking Urso that your levels will increase again, if it doesn't please let me know and I will also stop taking Urso.
I live in San Bernardino county! Victorville area to be exact. If you dont mind, let me know what your doc says and advises you on. We have slim pickings for good docs up this way
I went to UCLA on Feb 9th. I was given a diagnosis based on my blood tests, no biopsy needed. I am on 900mg ursodiol a day, with zero negative side effects.
I also have fatty liver disease although I only weigh 118lbs. It is due to having untreated high cholesterol for years. My blood sugar was slightly elevated too.
The hepatologists (I saw two during the visit) stated that the fatty liver is a more pressing matter than the PBC right now, as he said it is barely underlying, most likely stage one. I do get liver capsule pain on and off and for a year, I had it daily along with GERD, a strange feeling in my esophagus when swallowing, crushing fatigue, joint pain, but no itching. I took a sick leave from work for 2 months and I am feeling better.
I also radically changed my diet too. I eat little to no fat, only chicken, turkey, and egg whites, and no sugar at all, zero. I eat little salt and I drink 5 glasses of water a day. I eat non starchy vegetables and I dropped 12 lbs. Most of my symptoms besides feeling fatigue are gone.
I do have a minor case of Rheumatoid Arthritis and CREST syndrome, but the symptoms of those are negligible.
I suggest going to either GI or hepatology doctors. Are you seeing one in the San Bernardino area?
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I was diagnosed early with elevated AMA, AST, ALT, TBIL and DBIL but not ALP. I began cutting out preservatives and other toxins from diet and eating lots of oats with meals. My liver tests are normal and the itching is gone. I started Enbrel in Dec for AS and I'm hoping that it staves off PBC. 
Positive AMA went down to normal
Could high AMA be something else? 
Positive AMA, normal LFT - can fatigue be pbc related
